do autism researchers have self-awareness?

Spectrum News published some autism inspiration porn recently, and I appreciate it because it shows how dehumanized we are, even by the people in charge of helping us or eliminating us from the gene pool or whatever. The premise is that they asked a bunch of researchers for “something surprising that they learned from a person with autism”. The first one is season-appropriate:

Two women with autism once told me how much they love Christmas. I was amazed. Christmas can be so intense from a sensory and a social point of view, and I wouldn’t have predicted that to be autism-friendly. I love Christmas too, so we’re all getting excited about it together now.

–Sue Fletcher-Watson, chancellor’s fellow in developmental psychology, University of Edinburgh in Scotland

I didn’t grow up celebrating Christmas, but I loved Christmas because everywhere closes. It’s the single best day of the year to skate in spots you’d otherwise be kicked out of. “Christmas” could mean anything. I’d have awkwardness around Christmas even if I wasn’t autistic, due to the Jehovah’s Witness childhood. Liking Christmas is about the most normal thing ever, though. This autism researcher was basically surprised to bond with someone from the same culture over the year’s biggest annual bonding ritual. Just like Real People!

I had a surprising moment interacting with a young man with autism who works at the Duke Center for Autism and Brain Development. I was feeling especially hurried and stressed that day, but none of my colleagues seemed to notice. The young man approached me to ask how my day was going. I described my back-to-back appointments to him. He looked at me with concern and said, “Dr. Dawson, I think you need a break.” He was right, of course. Many people are unaware that people with autism are often very sensitive to others’ emotions.

–Geraldine Dawson, director, Duke Center for Autism and Brain Development in Durham, North Carolina

Imagine having that much emotional sensitivity and picking up on how much nobody believes you have it. It’s also interesting to me that she says none of her colleagues seemed to notice. Wherever I worked, I don’t think it’d be normal for me to comment to the director of my organization that she seemed a bit crabby and impatient. Note that this is the same pattern of being oblivious about power that men have when they creep out subordinates. Hierarchy inherently encourages ignorance at the top. Power relations are precisely what’s at issue when neurodiversity people hate on ABA and Autism Speaks.

I learned a long time ago that people with autism have deep and enduring needs for love and contact that are as strong as they are for neurotypicals.

–Jonathan Green, professor of child and adolescent psychiatry, University of Manchester in the United Kingdom

What’s disturbing about that sentence is the fact that it’s something he learned and not a standard operating assumption when dealing with all humans.

I spoke with a young woman who has autism, and she talked about how taxing and exhausting it is to use social scripts and to try and ‘camouflage’ her disability to fit in with peers. Even though some individuals with autism may appear to understand social demands at times, and they may execute the socially appropriate behaviors, they may not understand the rationale or be able to integrate the social behaviors over time. This part I knew.

The part that surprised me was how exhausting this can be. I was struck by the impact this has on her overall well-being. And it made me rethink the supports we offer and treatment strategies we are employing for these women in particular.

–Pamela Ventola, assistant professor, Yale Child Study Center

Fuck yeah when people reflect on their practices after listening to us. It’s weird to me that it wouldn’t be obvious on its face that needing hypervigilance for all social situations would be a drag. Normal people recognize the concept of introversion, so why would autism be less exhausting than that?

One thing I learned from a bright, autistic 7-year-old: I was pushing him a bit to do some pretend play with me, and after a few minutes of this, he gave me a disgusted look, put the baby doll in the crib, stuck a bottle in its mouth, covered it up with a blanket, then went back to lining up his trains. The message was clear: “I know what you want me to do and I can do it, but it’s not what I want to do.” At least in some cases, behavior is not a question of capacity but of motivation.

–Deborah Fein, professor of psychology, University of Connecticut in Storrs

This anecdote is bizarre because she doesn’t think about whether gender had anything to do with it. She’s so wrapped up in our “deficits in pretend play” that she’s blind to simpler explanations.

She seems like she’d be surprised by any instance of someone wanting different things than her.

And over-guiding children’s play is bad for their executive function.

One of my biking partners from when I lived in Minnesota is on the autism spectrum, although we’ve never talked about it, as it’s not really an issue. He has come to Europe several times to visit and bike with me. Compared with some people who take a long time to get to know, with my friend, there’s no peeling back the layers. What you see is what you get. It’s very transparent and refreshing.

–Tonya White, associate professor of child and adolescent psychiatry and radiology, Erasmus University in the Netherlands

In other words, the default social customs are bad for human relationships and people tell us that honesty is a type of social retardation. Why don’t they try to copy our way of doing things when it comes to honesty? Why is their behavior not considered impaired?

I have seen a number of adolescent girls over the past year with previously unrecognized autism. The stress these girls face at school is far greater than I had previously anticipated. ‘Struggling to be normal’ is a common complaint, even among girls with intelligence quotients over 140. Compensation is not without its costs. Though not entirely surprising, this has strongly influenced my clinical approach to the girls and their parents.

Such children often have some good peer relationships and appear to fit into their social world relatively well. But when their compensation breaks down, they present with emotional difficulties in adolescence that must be managed in the context of their autism. Effective treatment requires both a medical approach and also modified psychological therapy based on an understanding of the etiological factors underlying the presentation of anxiety or depression.

–David Skuse, professor of behavioral and brain sciences at University College London

He just used that many important-sounding words to say that everybody’s got problems and therapy is better when you understand people’s lives. What’s the point of this kind of bureaucratic language that isn’t really saying anything? His job is to bluff that he knows what it’s like to be an adolescent girl. Weird.

I learned from parents of individuals with autism that a major life challenge is the difficulty going outside the home, due to the behavioral responses their children exhibit to certain sensory stimuli. These may include hiding or screaming in response to loud noises such as fireworks, but also sometimes unusual reactions to apparently innocuous objects, such as a cardboard box. A person with autism might, for example, be determined to compress the box until it’s flat, irrespective of whether this is an appropriate behavior.

–Matthew Anderson, associate professor of pathology, Harvard University

This man was tasked with explaining something he’d learned from a person with autism and he couldn’t think of anything and asked their parents for stories to reinforce our image as nightmares from another planet. This is what I associate with childhood and flattened cardboard:

I feel like these epiphanies should’ve come before these people were Respected Autism Authorities and not after.  A lot of autism research is like being an expert on mulattoes 100 years ago.

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